There’s no escaping
from the fact that dementia has become an urgent global health crisis that is
only set to worsen. Global diagnosis rates are low, people are receiving
sub-standard or no care and stigma in many communities remains rife. But while
there is growing recognition of the scale of the problem, there is a key issue
that continues to be significantly overlooked.
Women are
disproportionately affected by dementia. The World Health Organisation lists
dementia as one of the top ten causes of death for women and it is the top
cause of death for females in the UK. Research shows that women not only face a
greater prevalence of the condition, but also fulfil the majority of care
support and face the greatest stigma.
Internationally,
women account for two in three providers of dementia care support. Cultural
norms, particularly in lower and middle income countries, often determine that
a mother, daughter or daughter-in-law should assume the role of family carer.
These unpaid care responsibilities mean many women are forced to sacrifice
their job opportunities, either reducing their hours or ceasing work
altogether. They are subsequently left vulnerable to financial hardship.
out
of school to help with caring duties and to save money to support the family
These gendered
roles can become even more complex, with women in some communities unable to
detach from their responsibility as homemaker and family carer. One woman in
India told us that she moved away from her family to receive dementia and
cancer care, as she wanted to preserve her self-respect by not relying on her
relatives.
A cruel paradox
means that while often relied on as care partners, women are also significantly
more likely to develop dementia themselves. Around the world, a greater
proportion of women than men live with dementia. Once they have overcome the
initial barriers to getting a diagnosis, women can also face discrimination in
care. A recent UK study identified that women living with dementia are more
likely than men to be prescribed psychotropic medication that can negatively
affect their physical health.
Too often around
the world, in every country, families do not understand what is wrong with
their loved ones when they develop dementia. In this situation, a simple first
step is dementia awareness. Community health workers and volunteers must first
be taught that dementia is a medical condition, and then take further steps to
utilise the tools that exist to support diagnosis and care.
Worryingly, in some
countries, there’s not even a word for dementia, with many people affected
accused of witchcraft and at risk of daily threats of violence. A lack of
recognition or understanding of the condition permeates from within the
community right up to a policy level. There is a universal stigma surrounding
the condition and extreme forms of discrimination can lead to the abuse of
women. Older women are particularly vulnerable to what has been called a
“triple jeopardy”, discriminated against because of their sex, age and medical
condition. Some people are bound by a cultural stigma that forbids them seeking
external help. The ramifications of these misunderstandings are dangerous and
can sometimes lead to abuse.
Kiki Laniyonu
Edwards a leading dementia advocate in Nigeria features in a new film released
for World Alzheimer’s Day ‘And Then I Looked Up Dementia - Women Speak Out.’ As
in many parts of the world, the stigma and misunderstanding of dementia that
exists in Nigeria is extensive and can be dangerous. People with dementia are
commonly labelled as witches, and sometimes abandoned by their families for
fear they too will be accused of witchcraft because of courtesy stigma. When
they are not abandoned, people with dementia are often locked away without
proper care and support to manage their symptoms. Kiki herself has been accused
of witchcraft due to her care support and association with people living with
the condition.
Next year, dementia
will become a $1trillion disease that’s a cost greater than the GDP of all but
the 15 richest economies in the world. There’s no longer time to shirk our
global responsibility to address this issue. The Global Alzheimer’s and
Dementia Action Alliance (GADAA) is urging global leaders to recognise dementia
as a medical condition that needs urgent action, and unite in ensuring better
diagnosis, care, research and awareness through the development of national
dementia plans in every country in the world. But so far only 12 countries have
taken into consideration the needs of women in their commitments and only 29
countries have a national dementia plan. Around the world people remain trapped
in a perennial struggle to access the diagnosis, care and support that they
desperately need - and for women the challenge is even greater.
International civil
society also has a role to play in addressing the stigma and in delivering
change for people living with dementia. We need as many voices as possible to
spread the word that dementia is not a normal part of ageing, and not a curse,
but one of the most prevalent and under-supported medical conditions the world
over.
This World
Alzheimer’s Day - and beyond it - unite with us in recognising dementia as a
global women’s health, social care and rights issue that can no longer be
ignored.
SOURCE: Amy White
As the need for greater resources grows, so too does the incidence of dementia diagnoses.
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